Keene Sentinel: Standing Tall

By Kaitlin Mulhere Sentinel                                 |                         0 

When 10-year-old Abby Bohannon had to pick a “me” object to teach her 4th-grade peers about herself at the beginning of the school year, she chose a thin, plastic tube.

The tube didn’t represent a hobby or serve as a memory from a distant summer trip.

Instead, it’s something Abby uses daily to get her nutrition.

“I think her friends were like, ‘Wow, that’s pretty cool,’ ” Misty Martinez-Bohannon, Abby’s mother, said of when her daughter explained her feeding tube to classmates at Franklin School.

Abby, along with Garret Nichols, a 3rd-grader at Franklin, and Manning Kirker, a 6th-grader at Chesterfield School, were recognized last week for their positive attitudes in the face of challenging health issues.

The local students were three of 17 honored as “champion children” by the state Council for Children and Adolescents with Chronic Health Conditions.

In New Hampshire, 42,000 children, or one in every six, have some kind of chronic health condition, according to the council.

Youth that have these long-lasting illnesses endure countless hours in doctors’ offices being pricked and probed. But as kids, all they really want to do is fit in and lead as normal a life as possible, Jeff Woodburn, executive director of the council, said.

Thanks to advances in medical technology, today kids with chronic illnesses are able to attend school, whereas a couple of decades ago, these kids probably would have been confined to their home or a hospital, said Bonnie M. McAlpine, Franklin School nurse.

“(Abby and Garret) do have significant chronic health issues, but if you walked into the classroom, you wouldn’t know it,” she said.

Despite their youth, those who know Abby, Garret and Manning describe them as wise beyond their years and with an optimistic outlook and an appreciation for life.

“The kids are like any other kids, but they are dealing with a lot more outside of just going to school every day,” Martinez-Bohannon said.

A list of diagnoses

Abby was 9 days old when she had her first seizure, and as she grew, so did the list of her diagnoses.

She has Short Chain Acyl-CoA Dehydrogenase Deficiency, which means her body cannot convert fats into energy. She also has epilepsy, asthma and hypotonia, or reduced muscle tone.

At 2 years old, she had her feeding tube put in, and she didn’t eat anything by mouth for a year and a half.

At school, she blends in with other kids, which is great, Martinez-Bohannon said. But there’s also a struggle in that people don’t always understand what she’s going through.

“It’s hard, but it’s also wonderful,” Martinez-Bohannon said. “She’s come such a long way. When she first came to Franklin, she could hardly talk.”

Outside of doctors’ appointments and 13 daily medications, Abby is a normal kid.

She plays the violin and does swimming and yoga. She loves to read, and also to learn, which is a good thing, since she has to be extra careful not to fall behind.

When she gets sick, it’s not a standard sickness and as she gets older, extended school absences make it harder to keep up with the class work. Fourth grade is already a lot of work, Martinez-Bohannon said with a laugh.

“When somebody like Garret or Abby is always smiling and positive, that’s something that should be celebrated even more so,” she said.

The daily routine

Just as most people slide on a pair of shoes or pants each morning, Garret Nichols puts on his leg brace, a part of his daily routine since he was 8 months old.

Garret was just 2 months old when he was diagnosed with Neurofibromatosis Type 1, which, among other things, causes tumors throughout the body and skin, like the small one on Garret’s right eye that requires him to wear glasses.

The disease is a genetic disorder that neither of his parents carry, meaning Garret’s was a random genetic mutation, his mother, Emily M. Nichols said.

For two and a half years now, Garret has been walking around with a broken fibula bone. He has tibial dysplasia, which weakens the bones in the lower leg, and once the leg breaks, it doesn’t ever heal again, Nichols said.

But he’s still an average little boy who wants to run around outside and play with friends at recess. Unlike other kids, though, he knows he has to sit out when what he calls his “daily pain” is hurting more than usual.

Nichols and her husband used to spend hours fretting over how they’d explain Garret’s complicated medical issues to others. Yet Garret, in the way only kids can, sums it up honesty and simplicity.

“Kids will ask, ‘What happened to your leg,’ and he’ll say, ‘I have a special bone and it needs extra protection,’ ” his mom said.

If Garret’s tibia breaks, the family has decided they’ll amputate his leg, rather than put Garret through years of casts and surgeries that still wouldn’t completely heal his leg.

Nichols and her husband struggled with the decision, researching endlessly and asking for suggestions. One day, someone asked whether they’d checked to see if Garret knew what he’d want.

He was 7 years old at the time, and he thought carefully before deciding that he’d rather have a fake leg that worked perfectly, Nichols said.

Plus, an amputation would mean his leg could go to science so other kids don’t have the same problem, he said to his mom.

Later, he told his mom:

“If I end up with a prosthetic leg, I promise to use my powers for good and not bad.”

A contender

Eleven-year-old Manning Kirker is more in tune with his body than most adults, not that he really has a choice.

After five years with Type 1 diabetes he can feel when his blood sugar is climbing too high.

Still, Manning constantly monitors his intake of calories and carbohydrates, checks his blood sugar 10 times a day and wears an insulin pump.

“The first thing he has to do every morning when he wakes up is prick his finger to check his blood sugar,” Manning’s mother Wanda K. Kirker said.

While Abby and Garret deal with medical issues that are less commonly known, Manning has a more recognizable disease.

But that doesn’t mean people actually understand what the disease is, said Janet J. O’Brien, family support coordinator for Partners in Health, a community-based support program where she works with about 80 families in the Monadnock Region who have children with chronic diseases.

There’s often misinformation and judgment associated with diabetes because people confuse the two different types, O’Brien said.

“(Manning is) such an advocate,” she said. “He takes cares of himself, is proactive and is the first one to be educating people, which is no easy task at his age.”

Another not-so-easy task? Manning’s active lifestyle in light of his diabetes.

He plays football and lacrosse, runs cross country and snowboards.

Many kids would find it a challenge to manage diabetes while playing sports, O’Brien said.

“But that is not Manning,” she said. “He’s a competitive contender in everything he does.”

Manning’s blood sugar level could change for several reasons, including his immune system, activity level and the weather, she said. The human body makes regulating blood sugar look easy, but it’s almost impossible to mimic perfectly when your body doesn’t produce insulin.

“(Diabetes) is always there, there’s just no vacation and insulin is not a cure,” she said. “Insulin is how they survive.”

There are a few days when Manning wishes he didn’t have diabetes, especially when it’s making him feel sick, he mom said. But in general, he’s highly positive and even helps out a younger student at his school who also has diabetes.

“It will get him down, but not for long,” Kirker said. “Once his blood sugars back in range, he’s up and going again.”